KNEEtalk

The OSTEOARTHRITIS DEPARTMENT => KNEE ARTHRITIS - Articular cartilage repair => CARTILAGE REPAIR - ACI & MACI (autologous/matrix-induced autologous chondrocyte implantation) => Topic started by: RichUK on June 19, 2006, 01:26:39 PM

Title: Looking forward to ACI?!
Post by: RichUK on June 19, 2006, 01:26:39 PM
Hi,
I'm new to this but i've been recommended to have a look on here by my surgeon (Mr Briggs @ RNOH - anyone else had ACI with him?). I am having the first stage done on 19th July and I am in the process of letting work know about the ops and how much time they can expect me to be off wotk etc. I am a PE teacher but luckily I have already arranged with my head of dept to teach classroom lessons when i first get back to work. Mr Briggs has suggested that I wouldn't be able to go back to work at all for about 5 weeks. Anyone got any experience with getting back to a physical job and how you have got around this with your employer.

Also, since looking at this site I reckon I've read about 10 horror stories to every success so I would love to hear from people who have had good experiences with ACI and any advice you could give to me regarding the above and rehab etc.

Cheers

Rich
Title: Re: Looking forward to ACI?!
Post by: Started1991 on July 03, 2006, 10:12:29 AM
Hi Rich,

First of all good luck, and second of all this forum is a little bit of a board of horror  :D

I had harvesting (1st stage) in April and 2nd stage (MACI) end of May '06 with Mr. Briggs as well. First Stage was a piece of cake as knee did not swell dramatically and I claimed stairs without problems within 2 days.

Having read most stories on this message board and speaking to one person who had the procedure done, I went into surgery with rather mixed feelings for the second stage. But be assured, for no reasons.

The only obsticals I had to fight were the discomfort of the cast and my struggle with medication (upset stomac and dehydration). I was out of hospital within 2 days. The only problem I faced during the the 10 days of 'wearing' a cast were immobility (welcome to the bathroom!) and slight back problems arsing from lying in the same position for quite some time.

After the cast was removed, things got better dramatically. My strength/stamina was back within 2 weeks and I was back to work after 3 weeks (could have gone in earlier, but played it save).

Things I did NOT experience at all so far were: swelling of the knee, infection, pain (stopped taking painkillers after a week)

I'm still not weight bearing, so I can't give my final 'verdict', but things have been very good so far without any complications.

Please let me know if you would like to have some further info.

Cheers,
Oli
Title: Re: Looking forward to ACI?!
Post by: shade on July 03, 2006, 12:47:52 PM
Rich,

Good luck with your procedure.† You'll find lots of info about this procedure but protocols seem to vary.

Here is an article on post-op ACI rehab that might give you a general idea of your surgeon's protocol.

http://orthopedics.about.com/od/hipknee/a/aci_2.htm

Trust your surgeon.  ~Shade
Title: Re: Looking forward to ACI?!
Post by: RichUK on July 03, 2006, 08:04:08 PM
Thanks for that Oli and Shade. Only a couple of weeks to go now until the first stage. Hopefully Oli I will have a similar experience to you. Any idea how many lesions you had and how bad they were. I have two lesions that are apparently quite bad so I don't know how that might effect the outcome. Also do you (or anyone else) know the difference between ACI and MACI (if there is one) and if they are doing all MACI at RNOH or whether it depends on the circumstances?

Thanks again and I'll let you know in a few weeks how I have got on.

Oh, one last thing Oli, what are you doing at the moment rehab wise? Did Mr Briggs provide you with a programme?

Good luck with your rehab,

Rich
Title: Re: Looking forward to ACI?!
Post by: blackbeltgirl on July 03, 2006, 08:50:03 PM
ACI is the original version of the surgery, and they use periosteum as the "patch cover".  MACI is membrane or matrix enhanced ACI.  It is often done arthroscopically instead of with an open incision.  Instead ot using the periosteum it uses a membrane/matrix as the patch, and in some cases the new cartilage cells are actually matrixed on the patch when it is placed.  This is 2nd generation ACI, and available in the UK, Europe, and I think Australia.  Not available yet in the US.  The recovery is a bit easier, but you still need to spend about 6 weeks NWB to let the cells mature.  And early studise have shown MACI to be better than ACI for larger lesions, with a reduced incidence of overgrowth of the caritlage cells.

Good luck with your surgery!
Title: Re: Looking forward to ACI?!
Post by: Started1991 on July 03, 2006, 10:42:00 PM
Rich,

Shade and blackbeltgirl gave you a nice run-through on your MACI question.

Some facts on the procedure can be found on the Gencyme Website, http://www.carticel.com/patients/default.asp. These are the guys who will grow/cultivate your cartilages.

On rehab, I started simple exercise to strengthen my quads after 2.5 weeks and with added weight (2kg) after 4.5 weeks (simple leg extentions). I will start using the cycle after 6.5 weeks and further strengthening the quads by doing squats.

Rich, you have to quiz Mr. Briggs. He assumes that you and I have gained enough information otherwise. If you haven't met Fred, the physio, yet, ask for a joint meeting once, to get a feeling yourself of what to expect, at what time, etc.

I questioned the two of them rigorously, and had a clearish picture after that (as written, the cumbersome experience with the cast was not expected).

One more peace of advice (or two) this forum is awesome. You get some valuable information form it. Unfortunately, there are not so many cases form the UK on here yet (well, positive ones). Given from the information I gathered on here, the procedure in the US is different as MACI hasn't gained FDA approval. Expect your rehab a quarter to a third shorter then most of the cases on here  :D

So, within 12 months (post scan) you will be off and gone!

On my lesion, it's a single one but quite big (over 2X2 cm) and on a weight bearing section of the knee.

If you would like to chat, let me know. My memory is still fresh and my spirit high!

Oli
Title: Re: Looking forward to ACI?!
Post by: DJF on July 05, 2006, 01:36:01 AM
Here is a link showing the entire Carticel operation.  Very interesting:
http://www.slp3d2.com/sfi_1012/broadcast.html

Don
Title: Re: Looking forward to ACI?!
Post by: RichUK on July 24, 2006, 07:24:05 PM
Hi there, well I thought I would have had the first stage of my ACI done on Wednesday 19th. The theatre slot was booked, a team of the best surgeons around were ready to perform the op and at half past three on the day before I got a call saying it had been cancelled due to a lack of beds on a ward! Anyone else out there been through this at RNOH? I've now been told that the next available date is 30th August. Typical NHS I suppose?!

Rich
Title: Re: Looking forward to ACI?!
Post by: kiwi girl on November 02, 2006, 07:30:32 PM
Hey Rich,
I am meeting Mr Briggs soon as I have been refered for the same surgery.
Have you had yours now?
How did it go?
Well I hope!
Nicole
Title: Re: Looking forward to ACI?!
Post by: RichUK on December 06, 2006, 07:59:22 PM
hi nicole,

no i haven't had the surgery. I had what was meant to be the harvest about 6 weeks later than planned but during the arthroscopy they found that my knee was too damaged and therefore probably unsuitable. i had 2 loose bits of bone removed as well as a large flap of cartilage. I went back to see Mr briggs about 3 weeks ago and actually saw his registrar mr david. he was really helpful and we talked through the options. apparently they have not done aci on an area as large as the defect in my knee. it sounds now as if they are going to do an osteotomy to offload the pressure going through the outside of my knee and they might still attempt aci. I am going back to see mr briggs/david tomorrow to see what they have finally decided.

my one word of advice before you see him (if you haven't already) would be to use these message boards to get as much info as you can. briggs is a pretty busy bloke and from what i have seen he tends to assume you know all about it. the more informed you are the more you will be able to ask him about his exact procedures. RNOH are trialling the treatment still and they will randomly assign you to either ACI or MACI. I think their results so far are showing no real differnces between the 2 although MACI is a simpler op.

since i have had a good read on here and have seen them kind of knowing what i was talking about, they have seemed more keen to get something done for me. since my last op my knee has been by far the worst it ever has with pain on a daily basis so they could see i was desperate to get something sorted.

Hope that helps. let me know how you get on and i'll be back on here with what is decided tomorrow,

Rich
Title: Re: Looking forward to ACI?!
Post by: JulianUK on January 26, 2007, 08:35:17 PM
Hi Rich,

Just to let you know , if you haven't read my posts, is that I had MACI under Mr.Briggs & Mr.Pollock at RNOH Stanmore.

I have had both knees done, the left 3.5yrs ago and the right 2.5 yrs ago.

Both have been a complete success, although very long rehab.

I can know run up to 4km and do weights, jumps, squats, stairs, etc. All with no problem, except for some mild pain if I really do too much at once.

If you need any advice then get in touch, although best message direct as I'm not on here that often anymore.

kind regards,

Jules  :)
Title: Re: Looking forward to ACI?!
Post by: RichUK on January 30, 2007, 11:34:44 AM
Hi Julian

Glad to hear a success story on here at last! It has been decided that MACI is my only option now so Mr Briggs is willing to give it a go. My problem area is quite deep so they are going to graft some bone from a non-weight bearing part of my knee. Apparently this 'sandwich' technique does slightly reduce the chances of success but I'lll give anything a go at the moment. I had the harvest yesterday so should have the big one in 4-5 weeks.

I'm quite apprehensive about what to expect in terms of pain at the moment - many people have said on here that it is almost unbearable.

It would be great if you could give me some detailed info on your rehab programme and any advice you got from your physio. Did RNOH put you in contact with your physio or did you have to find one yourself who knew about ACI? My girlfriend is a sports therapist and is keen to get involved - getting some advice from a physio who has done it before would be a great help. My email is [email protected]

Thanks for taking the time to tell me about your positive experiences,

Rich
Title: Re: Looking forward to ACI?!
Post by: tundi on January 30, 2007, 09:32:23 PM
Rich,

Just wanted to say good luck with your MACI. I had my harvesting arthroscopy last Thursday for plain old welfare ACI† ;).† I know everones recovery is different but it will be interesting to compare progress.

I can fully relate to what you're saying about being apprehensive, there are some real horror stories in some of the posts. I figure that if it's successful in the long term it will be well worth the short term pain / discomfort - does make you realise that recovery is definitely long term though.

My op is being performed by John Skinner who I believe works with Mr Briggs at RNOH, I'm actually having the op at BUPA Bushey and will be having my physio in Southampton, I'd be particularly grateful if you could share any info you receive about physio as it's unlikely i'll find any physios locally with ACI experience - just have to find someone whose particularly good with knees.

Good luck again,

Tony
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on January 30, 2007, 09:42:52 PM
Hi Tony

Looks like u and i shall be going thru the process close together also.   Im waiting for them to schedule my ACI now .... had the biopsy the end of November.
Look me up.  Im online almost non stop since i am unable to work until after my ACI surgery.   Where are your lesion/s ?

Hope to hear from you soon
 
Ladee
Title: Re: Looking forward to ACI?!
Post by: RichUK on February 01, 2007, 02:48:19 PM
Hi Tony and Ladee. Its good to know there are a few people in the same boat. I guess you two will have your ops before me so best of luck. You will have to let me know how the first few days go regarding pain, how long you were in hospital and how long you will be in plaster etc.

Tony, I will definitely share info in terms of physio recommendations and rehab etc. I have heard some stories about physios with no ACI experience ignoring the surgeons advice and getting their patients weight bearing way too early. I guess you just need to be forceful when dealing with the physio and not doing anything you feel contradicts what the surgeon has recommended. I think RNOH have a physio who deals particularly with recovery from RNOH. Perhaps someone on the message board could provide us with some details - a previous message from Oli said something about a guy called Fred.

Well keep me updated on how you are getting on and I'll do the same.

Rich
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on February 02, 2007, 01:43:38 AM
Hi Rich
Well I'm hoping to have my surgery soon.  My doctor has never done 3 lesions at a time before and is consulting with other Doctors that have.  As soon as my doc makes up his mind if he is comfortable to do the surgery or send me to another surgeon the surgery can be scheduled.  I personally cant wait this has been a very long process so far with 3 other surgeries.  I would be happy with a 50% reduction of pain and the ability to return to work.  One can only take so much sitting around.  On top of everything else i have a new "crunch" in my knee, which usually means the lesions are gettin bigger or a new one is starting.  I visit this message board several times a day to read posts so i will keep you all informed as i find things out from my doc.   Its nice to have someone to share the pain and anxiety with.

Title: Re: Looking forward to ACI?!
Post by: RichUK on February 02, 2007, 10:23:51 AM
Hi Ladee,

Yeah I feel a bit better about the whole thing now I know I can talk to people who are at a similar stage. There are way too many horror stories on this site but I guess if people have a really good experience of the surgery they don't feel the need to come on this sort of site? I am sure everyones experience will be very different. I suppose we just have to follow the surgeons/physios guidelines as closely as possible and keep our fingers crossed. I think I only really have one lesion but it covers most of the lateral femoral condyle and is deep - the bone underneath does not have a very good blood supply and so it is very fragile and is prone to breaking away - I have had 2 ops to remove loose bodies. I feel similar to you in that I would accept any decent improvement. It has got to the stage where it really effects my everyday life. I know I'm in for a long and stressful rehab but the potential benefits way outweigh the possible pain etc. How bad was the pain for you after the OATs? That is my main worry at the moment but I am trying to forget about it and just hope for the best. Another guy on here said that he began to improve steadily after the cast came off and that the cast was the main cause of discomfort.

Hope you hear some good news from your surgeon soon,

Rich
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on February 02, 2007, 07:13:23 PM
Hi Rich

My knee has kept me from working for the last 7 months.  Doc wants me off of it as much as possible, less wear and tear i guess. Ive never been one to just sit around, I was always working or doing something. Now its all i can do to make it to the store to get the things that we need.
 As for the OATs procedure i had... lets just say that when i woke up after the surgery i was very misserable for about 2 hours til they got the pain under control.  Then i was fine until it was time to get out of bed to go home.  Once i took my leg off the bed and it started to dangle....it was bad.  I took the pain medication ever 4 hours for the first 2 days.... so once i got home and got comfortable it really wasnt that bad.  I just had to move SLOWLY to the bathroom and back.  After the 3rd day i only took 1 pain pill every morning and it held me all day.  I was non weight bearing for 3 weeks... then partial for 3 weeks..... and it probably took me another 2 weeks with full weight bearing to get off the crutches.
 As for this cast u speak of for the ACI.... im not sure why u think u will need one?  I am only going to have a brace that locks me in full extension.  Ive not heard of anyone having a cast after an ACI surgery ... unless of course they had another procedure done at the same time.
Title: Re: Looking forward to ACI?!
Post by: tundi on February 06, 2007, 08:09:14 PM
Hi LadeeStingray / Rich

† Sorry I've not replied sooner- things have been a little hetic ( and I'm a slack git sometimes if i'm honest† ;) ). I also have a single lesion on the femoral condyle, I had an arthroscopy back in July and once the consultant had finished removing the damaged cartalige there was an area of exposed bone approximately 2cm x 2 cm, he performed microfracture and the results were positively underwhelming !!!†

† My knee is now as bad as it's ever been,† I don't know if things are the same with you but once you've crossed everything you used to enjoy doing off the list of things you can still do you're prepared to do anything to get some of them back on the list.† I'm 36 and my first consideration when any of my friends ask me if I fancy doing something / going somewhere is "will my knee be able to handle it ?" 9 times out of ten the answer is no.† I just hope I can get to get back to doing some of the things I used to take for granted, if it takes painfull surgery and rehab that's slow and bloody hard graft then count me in ( I'm also having an osteotomy to realign my leg - just to make sure that i'm in as much pain as possible )

† I'm sure it's going to be difficult, I think we all realise that - hopefully having people to share our experiences and concerns will help.† Rich - I'd have to say that I've never heard of anyone being in plaster after an ACI, i'm expecting to be in a brace but I'll let you know that changes.

16 days and counting† :o !! Good luck to you both,

Tony
Title: Re: Looking forward to ACI?!
Post by: gammyknee on February 06, 2007, 11:26:42 PM
There seems to be alot of concern that this site is full of horror stories. From my point of view I had 3D MACI (first one in UK) in November and feel very positive about the procedure. Like Tundi I had a lesion on my femoral condyle (similar size) and, like Tundi when the defect was discovered (in May) my oS performed microfracture which did OK but not good enough. You can check my progress in more detail on my post 'MACI using CaReS system but basically: without it my bone would've worn away further and i'd have needed a knee replacement in the next few years (I'm 38) so why not give this a go, yes it was painful initially (mainly because of the operation) but I've had little pain since , and you need to be patient with rehab but you will make progress, if slowly.

All this positivity may change when I get the results of my scan on Thursday at my 12 week appointment but to date I haven't had any major setbacks, the knee feels pretty good, I'm off crutches and my quad is getting stronger.
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on February 07, 2007, 04:43:48 AM
Tony, Grammy, Rich

Tony i have to agree with your, at this point im going crazy waiting for them to schedule the surgery.† I cant wait to get the rehab started.† I know its a long haul, but whats a year if it gets me back to doing some of the things i like to do.† All my problems started 17 months ago and they just keep getting worse.†
I dont look at the stories on this site as "horror"† i like to know what im gettin into from someone that has been there.† Doctors are not always the best to explain the "little" things that we will have to go through.
Ill be counting the days down with you to your sugery.† My doctor is due to call me on the 8th with my "game plan" for the surgery.
Please keep us posted on how things are going

Ladee
Title: Re: Looking forward to ACI?!
Post by: tundi on February 08, 2007, 09:23:10 AM
gammyknee,

† Good luck with your scan today, I'm sure you'll be updating your thread to let everyone know how it went - I'll check it out later.

Tony
Title: Re: Looking forward to ACI?!
Post by: RichUK on February 08, 2007, 09:56:43 AM
Hi guys,

Just wondered whether you were from the UK, US or where? The surgeon who did my harvest told me that I would be in plaster for 2-3 weeks and a guy on here (JulianUK) has told me that he was in plaster afterwards too - he had his at the Royal National Orthopaedic and thats where mine is so perhaps they have their own procedure? I know it differs quite a bit between Uk and US. Tony, I totally know where you are coming from in terms of not being able to do much. I gave up sport long ago and I'm probably one of the few 27 year old PE teachers who finds walking a challenge,, let alone running, rugby, football etc. I also had a large flap of cartilage removed from my knee and this has too caused me the most problems I have ever had - 5 minutes walking and my knee stiffens up and I get really bad pain in the back of my knee. They thought about doing an osteotomy on me but my medial side is not great so they decided against it. This really is last chance saloon so I'm gonna follow the rehab programme to the letter and be very careful/patient for the 18 months or so until hopefully I get the all clear. JulianUK talks about being extra cautious and he has had great experiences ofACI on both knees.

Good luck to you all and keep us all posted as to how you are getting on,

Rich.
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on February 09, 2007, 03:54:38 AM
Hey Rich

Yes im from the US, guess there is a big difference in post-op management.  I just received a call from my doctor today. He feels my case is too complicated for him to do. So now he is sending me to another doctor in Boston for the surgery.  Im not real happy about having to go so far away from home, but if this is what it takes to get me back to work then i have no choice.  I hope it doesnt take too long to get in to see this new doctor.  I'll keep ya posted as i get more information as to the "when and where" for the surgery.

Ladee
Title: Re: Looking forward to ACI?!
Post by: tundi on February 26, 2007, 04:02:19 PM
Hi Rich / Ladee,

  Hope everything is going well with you both. I got out of hospital yesterday after having my second stage ACI and a femoral osteotomy last Thursday (22nd ). Every thing seemed to go well and my OS was very happy with my initial progress.  OK, so on to the pain issue ( which had been a concern for us all after reading previous posts ), I donít want to tempt fate ( and Iím sure Iíll p155 some people off a little  :-[ ) but I havenít had any  :o.  I was on a PCA overnight ( came back from surgery about 10pm ) and was never actually in pain when I used it but didnít want to take any risks, just taking paracetamol and ibuprofen now 4 times a day ( plus plenty of ice for the swelling )Ė and again, never because I am in pain, just as a preventative measure, I plan to cut down / phase them out over the next couple of days Ė It would seem Iíve bee very lucky indeed.

My main concern now is that Iím super paranoid about doing anything to damage the graft, Iím sure itís quite normal but Iíll be devastated if this procedure doesnít work and itís down to something Iíve done.

  I completely understand why everyone hates the brace. Iíve only had it on for a couple of days an Iím already looking forward to a ceremonial cremation of the damn thing in 6 weeks time !!!!  Itís also dawning on me just how difficult itís going to be to do even the simplest things Ė Iíll have to get used to be dependant on people for a while and I think itís something you should consider and make plans for as even the simplest things can be an ordeal. Iíll keep a note of unexpected things that crop up that I hadnít taken into account and let you know.

Will keep you updated with my progress,

Tony

P.S. Rich, I remember you asking about a cast. I donít have one but when I was admitted the nurse was under the impression that Iíd be having one. After reading my notes and discovering I was having the osteotomy (which I believe you are also having) she said that  was the reason I wouldnít be having one.  Who knows Ė she could have made it up, it may just be down to consultant preference, but if thatís the case itís unlikely youíll be having one.
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on February 26, 2007, 05:51:47 PM
Tony,

So glad to hear your sugery went so well, and no pain thats great!  I can only hope that i will be so lucky.  Right now im still fighting my insurance company to allow me to go to the surgeon in Boston.  The medical directors are reviewing it now, they are trying to find a surgeon closer to home for me and having a very tuff time with it.  So now they tell me Wednesday i should get my answer.  Then my next waiting game will be to get in to the doc in Boston which from what i hear can take up to 6 months.  Since i had my biopsy in Nov the clock is ticking to get this surgery done.

Once more i am soooo glad that all went well for you so far ... please keep us posted with your recovery.

Ladee
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on February 28, 2007, 04:45:24 PM
Hey all

Well the insurance company refused to allow me to go to Boston.  They found a doctor for me to see in Columbus now.  My appointment to meet this doctor is March 19th, so we will see if he feels he can fix my knee.  Atleast its only a 3 hour drive for me to go there ... Boston was a 15 hour trip.  So cross your fingers that this works out for me. ( doc number 3 for surgery number 4)

Ladee
Title: Re: Looking forward to ACI?!
Post by: RichUK on February 28, 2007, 06:58:56 PM
Hi Guys,

Tony, glad to hear about the good start to your recovery. Make no apologies about not experiencing any pain. This is obviously great news for you and I am pleased to hear some positive news too. From what I have read many people develop some kind of paranoia about damaging the graft. I think there is a fine line between being extra careful with rehab and not doing enough to regain movement and strength etc. A guy I spoke to said it is generally Ok, even falling and stuff as long as you are not putting weight through the knee when it is straight.

On the cast front, the same guy who also had his MACI at Stanmore said he was in a cast for about 10 days. I am not having an osteotomy any more but I have been told I'll still be in a cast - guess different surgeons have different protocols and I suppose RNOH are particularly cautious. I agree with you that this is gonns have a big impact on your life - I'm beginning to think it'll have more effect on my girlfriends as I am gonna be so useless for so long. Let me know how you are getting on with every day things - putting your socks on, going to the toilet, getting your lunch etc. Also, have you managed to find a physio with experience of ACI?

Ladee, good news that something looks like it will be sorted. Lets hope the 19th March is a good day all round as thats when my MACI is. Good luck with your consultation and I hope the surgeon is able to do something for you.

Let us all know how you get on guys. Take care,

Rich
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on March 14, 2007, 08:08:52 PM
Hey Rich

Your day is gettin closer!  I Hope all goes well for you and cant wait to hear about your experience.  I finally got all my records shipped to the new doc, so everything is ready for me there.  Crossing my fingers this doc can do something for me.

Hope to hear from you next week after you get home and get settled.

Ladee
Title: Re: Looking forward to ACI?!
Post by: RichUK on March 15, 2007, 08:53:04 PM
Hi Ladee,

Good to hear that things are still moving in the right direction for you. I am just glad that I will soon have the op over and done with and I can get stuck into the rehab. I still think I am not quite aware of just how much this is going to effect my everyday life but, touch wood, it will all be worth it in a year or two's time.

Tony, how are you getting on with the recovery / rehab? I hope things are still going well and you have some more good news for us!

I'll get back on here and let you know how I got on some time next week..... All fingers and toes crossed!

Rich
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on March 18, 2007, 09:52:43 PM
Rich,

Just wanted to wish u the best on your big day tomorrow. 

Ladee
Title: Re: ACI is best thing since sliced bread; heres how to prepare for it
Post by: Chondrosoldier on March 19, 2007, 08:11:56 PM
I am a 27 y.o. post-op carticel patient recovering from a 4CM patellar lesion.  Have nothing but OUTSTANDING things to say about the procedure and was pain-free three months

PHYSICAL THERAPY: Started PT two weeks post-op and its been a great experience as they really help coach you through the rehab.  ASK AND GO WITH YOUR SURGEON'S RECOMMENDATION FOR A PT WITH CARTICEL EXPERIENCE.  This is critical and will be well worth going out of your way for.  Also, straight leg raises are very painful the first few weeks.  The purpose to maintain quad tone and for that, 150-200 daily quad sets are just as effective.

CPM: Like the stocking, annoying to all, this is a critical piece of equipment that can make or break you. The 4 2 hr sessions inconvenient but well worth the alternative: being really sore in the morning after 8 straight hours on it.

ICE/COLD THERAPY: The automatic ice machine; EB ICe, Polar Pak ect. (automatic cryo-cuff) has been a blessing.  I would encourage everyone having or considering the procedure to get one. One eBay they can be had for $40-50.  I also picked up a mini-freezer for a $150 and just refreeze ice blocks without ever having to leave the futon.

The other item which is a MUST HAVE is what looks like a dog leash that use to lift your foot while in the straight leg brace.



This video is graphic but highly informative for those who are  trochlea implantion on a 38 y.o male.  The surgeon, Dr. Jack Farr is a highly experienced carticel surgeon based out of Indianapolis.   The video is OUTSTANDING because Dr. Farr does a great play-by-play as he does the procedure.   Video is an hour long but a MUST-SEE for all

http://www.slp3d2.com/sfi_1012/broadcast.html

Have a couple of great studies (PDF files) on ACI vs Mosaicplasty and a 2-9 year study on carticel treatment.  Will send them to you upon request.

Carticel's patient education reps are great at answering questions and concerns. You're paying them so use them.  I'm just a happily satisfied patient/athletic trainer but can be contacted anytime at [email protected]  Best Wishes, Brant
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on March 19, 2007, 09:11:37 PM
Hi ya Chandrosoldier,

Thanks for all the info,  i have seen that video of the surgery very informative.  I went thru the therapy, ice machine and CPM with my OATS i had last summer.  I can say the CPM really didnt bother me much but i never could figure out how someone could sleep with that on.  As for the "dog leash"  great idea i had lots of trouble getting my leg out of bed,  i shall try this when i have the next surgery. The first week after my OATs someone had to pick up my leg and hold it until i got to the edge of the bed, which didnt seem to bother them anyway since they would take my crutches from me so i wouldnt try to get up alone lol.

The doc i went to see today said he didnt have the experience to do such a complicated case, but he did mention Dr Farr. Indianapolis and Boston are almost the same distance for me to drive.  The doc in Columbus today said he would write a letter for my insurance company to go along with one from another doc, and hopefully that would be enough to get me to a doctor with the experience to help.

Who did your aci surgery?

Ladee

Title: Re: Looking forward to ACI?!
Post by: Chondrosoldier on March 21, 2007, 06:31:20 PM
My surgeon was Jack Seaquist in Austin, TX.  I actually moved down here, took a job with his healthcare system for a month and intentionally got fired (refusing to speak Spanish) just so could get their health benefits and have all the surgery done.  Best move every made.  As a recent vet, the V.A. didn't even have the procedure on their books so I feel you wholeheartedly

A former Indianapolis resident, I have worked in Dr.Farr's group and seen his surgeries in person.  He is a pioneer of the industry, outstanding interpersonal skills and no case is too big for him.  Don't know about the guy in Boston though have saw his name mentioned with OATs a gazillion times.  Keep in mind its not a fly in, have surgery, and get out.  A good 6 months of rehab ends up costing more then the surgery itself. 

Got a lot ahead of you, wish you the best. Keep us updated.
Title: Re: Looking forward to ACI?!
Post by: tundi on March 21, 2007, 08:36:53 PM
Ladee,

  Sorry to hear that the outcome of your appointment wasn't more positive, hopefully you'll find someone capable of taking on your case soon !!! 

  Rich, you're probably still in hospital now but hopefully you're doing well and by the time you actually read this you'll be well on your way to making a speedy recovery.

  My recovery is going well, I have my 6 week check up on the 29th, it's a week early as my consultant is on holiday the following week, I moved the appointment back as it was originally scheduled for 7 weeks and I figured i'd rather get started with weight bearing and physio as early as is safe, worse case scenario is that I'm told I have to wait.  My physio at the moment is pretty much non-existent, just doing some simple exercises to prevent muscle wasting and build flexion / extension.

  I went back to work last Thurs / Fri, this caused my knee to swell up a little Iíve cut down to Mon/Wed/Fri this week and probably next Ė luckily Iím an office bod so I can sit on my butt all day, unfortunately, itís impossible to keep your leg elevated and us a PC.

  Iíll let you know what the consultant says when I see him next week, hopefully Iíll be able to start some real physio and get back to weight bearing Ė I never though one of my goals would be to be able to carry a cup of tea from the kitchen to the lounge !!!  ;D

Take care

Tony
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on March 22, 2007, 01:44:09 AM
Tony,

Hey great to hear from you glad you are doing well. Come next week ill know where the insurance will let me go, I have again put in a request to go to Boston, and also this time to see a doc in Indiana.  Sometime soon they have to give in dont they?  Until then here i sit, but im starting to get the hang of this cooking thing now, hubby is happier lol.   Keep us posted on your visit and weight bearing status next week.

Rich i hope all is going well for you, cant wait to hear from you!

Take care all
Ladee
Title: Re: Looking forward to ACI?!
Post by: RichUK on March 22, 2007, 10:52:33 AM
Hi Guys,

Got home about 7ish last night and had a pretty good sleep. I am in plaster for 10 days and then I see the physio to go through the rehab protocol.

Pain was quite bad in hospita, even thought I had a femoral nerve block and a PCA - thing where you can administer your own morphine when you want it. Last night and this morning have been fine. No real pain and I haven't taken any pain relief since last night. I had a look at the knee when they changed me from a half-plaster to a ful one. I didn't look too swollen but I do have about 15-20 stalpes. They didi think I might need a bone graft due to the depth of the defect but in the end it wasn't necessary although the defect was still big - 2X4cm.

Fingers crossed I suppose that all continues going well, I'll keep you updated and let me know how you are getting on.

All the best

Rich
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on March 23, 2007, 01:48:36 AM
Rich,

So glad to hear you are home and all went well.  Sorry to hear that u had so much pain even with the femoral nerve block... I was really hoping to hear that helped with the pain.  Now the fun begins and you are your way to getting some of the things back in your life that you enjoy doing.   Fingers crossed here for you as well

Ladee
Title: Re: Looking forward to ACI?!
Post by: tundi on March 25, 2007, 08:20:29 PM
Rich,

  Just wanted to say that I'm really glad everything went well and you've made it through the painful phase. I'll post again after my consultation on Thursday but I have a little bit of advice - buy your girlfriend some flowers tomorrow, she's going to earn them a million times over throughout the next few weeks  ;). Without my family ( who luckily live very close ) and my ex I really don't know how I would have coped.

Hope your recovery progresses well in both the short and long term.

Tony
Title: Re: Looking forward to ACI?!
Post by: RichUK on March 31, 2007, 05:24:50 PM
Just thought I'd add an update on how I've been getting on:

I had the cast off yesterday which was a real relief - it was a full length cylinder and was really beginning to annoy me. Although now all the hard work has started! My first session with the physio went well and I was surprised at what I could do and what she pushed me to do. I just about got to 90 degrees of flexion and since then I have been able to carry the weight of my own leg rather than use my other leg to support it. I am still non weight bearing for at least another 2 weeks but I am going to get stuck into the exercises as much as the swelling and pain allows. On that note, I have not really experienced any pain and I don't take any pain killers - just anti-inflammatories and loads of icing to get the swelling down as much as possible.

One thing I am concerned about is that when I push into the last few degrees of extension using a gym ball as a resistance, my knee seems to pop - I can see it happen and feel it on the outside of my knee. Don't know whether anyone else has experienced this? Perhaps it is due to the swelling?

Anyway, mostly positive news to date with the only problem being the above and that the knee still feels very tight when I try to flex it but I guess that is to be expected.

Hope everyone else is good and progressing with their rehab/insurance companies,

Rich.
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on April 01, 2007, 03:41:26 AM
Rich,

Great to hear the plaster is off and that therapy went so well.  90 degrees already thats wonderful !!  Im sure that knee tightness will be around for a while.  So no pain at all at this stage, thats also wonderful to hear.   Wanna swap me knees?? 

I wish you the best and keep the updates coming.

Ill have lots to say next week about my situation... ugh

Ladee
Title: Re: Looking forward to ACI?!
Post by: RichUK on April 02, 2007, 11:24:34 AM
Hi Tony,

Just wondered how your 6 week consultation went? Our experiences sound pretty similar at the moment. I haven't had any pain that is worth mentioning and I am also getting stuck into the flexion/extension and muscle maintenance exercises. Many people on here (ladee included) are particularly concerned about using a CPM. Just wondered whether you use one as it has never been mentioned to me and the other guy who went to RNOH also never used one?

I guess that after you have that initial all clear from the consultant you will be able to start putting weight through the leg and perhaps do some swimming and light cycling etc? I have got a rough outline of the rehab protocol from RNOH and they suggest that these sort of things can start to be done at week 6 although I assume yours will be a bit delayed because of the osteotomy? I have about 90 degrees of flexion already so I am quite pleased about that but i have read on here that the last few degrees of extension can be the hardest to regain.

Well let me know how you get on and we will have to compare rehabs!

Rich
Title: Re: Looking forward to ACI?!
Post by: tundi on April 02, 2007, 11:09:29 PM
Hi Rich,

  Had my 6 week consultation last Thursday, everything went really well and the consultant was pleased with my progress, especially as I was only at the 5 week point.  I did a little bit of weight bearing during the consultation with two crutches and then he switched me onto a single crutch Ė I ended up doing this strange hopping thing as my brain was so used to not putting any weight on my foot it just didnít seem right. Once I managed to convince myself it was OK to do it I was amazed that it wasnít painful at all. The consultant told me I was fine to start physio, I could ditch the brace (hooray !!!) and should only use a single crutch whenever possible, I have another appointment in 6 weeks and he told me he wanted to see me without my crutches.

  Everything was going great - until I left work on Friday that is ÖÖÖ Apparently, wet, moss covered paving slabs and the rubber ends on these crutches Iíve got donít mix at all well.  My left crutch slipped away from me and because my right foot was out in front of me I ended up slamming it into the ground with all my weight on it  >:(.  It was incredibly painful for 30 seconds or so but luckily the pain was on the inside of the knee ( Iíd been having problems with pain there since the op and figured it was probably due to the re-alignment ), not the outside where the graft was done. I was right royally f*$#ed off, couldnít believe it happened on the very first day Iíd left the house without my brace on, after an hour or so Iíd calmed down and figured what ever was done was done and I couldnít change it, touch wood, Iíve not had any pain at all so Iím staying positive.

  Until today the only physio Iíd done has been muscle maintenance + flexion / extension exercises. I get the impression that CPM machines are all the rage in the states but are only provided here whilst youíre in hospital Ė I used one for a couple of days as my consultant likes to get you to 90 degrees if possible before he discharges you. I did get a little slidy disk that you put on the floor and rest your heel in to assist with flexion exercises but I didnít get on particularly well with it, I found sitting on the arm of my sofa with my leg dangling over the end was the most comfortable way for me to do the exercises.  When you say youíre concerned about the CPM, is that concerned about using one or concerned about not having access to one ?

  As Iíve already implied I had my first physio session today, my PT has done ACI rehab before with one guy who has had both knees done on separate occasions, so technically this is her third Ė This was quite reassuring for me as I was expecting to end up being somebodyís guinea pig.  The osteotomy wonít make any difference to my rehab as apparently the femur will have healed sufficiently to bear the weight without any problems.  Couldnít believe that within 10 minutes of arriving she had me on the rowing machine, afterwards she took me through a series of exercises (lunges / squats etc) that I can do at home. Iíll be having weekly physio until my next consultation and weíll re-assess things from there.  I know that rebuilding this scrawny lame arse excuse for a right leg is going to be hard work but itís going to happen.  The knee is a little swollen and sore now but itís too be expected Ė thank god for ice. I started off the session with approx 95 degrees flexion and was at around 100 by the end of it Ė Iím having extension problems but thatís nothing new, I found out when I had my microfracture last year that I have some bone growth that prevents full extension, Iím hoping that the re-alignment hasnít exasperated the problem but I have my suspicions. I think that the most important thing with the rehab programme is that you make good progress and nothing happens to do any damage. I do hope our programmes donít differ too much though as weíll both be wondering whose is right  !!!

  Apologies for babbling, and I hope at least some of this makes sense and is helpful in some way.  If you have any questions on what you can expect a month down the road a any point then feel free to fire away. Look forward to hearing about your rehab news, I think it'll help keep things in perspective.

Cheers,

Tony
Title: Re: Looking forward to ACI?!
Post by: RichUK on April 13, 2007, 04:55:32 PM
Hi Tony

Glad to hear your rehab is underway, even with the mishap you mentioned. I think everyone who has had this surgery would have been paranoid about damaging the graft. I can only assume that it is a little more robust than we sometimes think otherwise we would all be in plaster from hip to foot for weeks on end. I did have a little incident on the stairs when I was still in plaster but there was no pain so I just made sure I was a little more careful up the stairs in future.

I am a bit lucky in a way as my girlfriend is a sports therapy lecturer/practitioner so she is taking care of my rehab. She has never treated anything like this before but she is researching ACI/MACI rehab loads and we have a physio at RNOH who we can call if we have any questions. I have just been doing the exercises prescribed by that physio since I came out of plaster. The leg, although not really getting any bigger definitely feels stronger and I have a lot of the movement back - up to about 115 degrees flexion and a similar story to you with the extension - those last few degrees that seem to be almost impossible for everyone. I have read on here that a few physio's have got their patients doing an exercise lying on their front on the couch with their leg over the end and a weight on their heel to force those last few degrees. Most have said that this caused problems after the session so possibly one to avoid if it is suggested.

I am also glad to here that your surgeon wanted you to start partial weight-bearing at week 5. I went for a check up yesterday (I am not yet at 4 weeks so not quite sure why I went in so early) and I was told that I should start 'shadow weight-bearing' from next week - basically just touching my foot on the floor and slowly building it up. My only gripe with RNOH is that nearly every time I have had an appointment or spoken to someone when I have been in hospital I have seen a different person and they seem to say different things - the most alarming of these being that one said I couldn't drive for 4 months and another saying 8 weeks as long as I was comfortably weight bearing. Have you been given any quidelines regarding this? The guy I saw yesterday said that I should be building up to full weight bearing by week 8. I thought that seemed a bit early but what you said has made me feel a little better about it. On the rehab side of things, I am gonna do a fair amount in the water and carry on with the previous exercises for now.

So tit seems we are not a million miles away from each other in terms of what we are doing and what we have been told. Hope your rehab continues to go well and keep me updated on how you are getting on,

Rich
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on May 17, 2007, 06:04:37 AM
Rich, Tony,

Hey just checking in with you guys, havent heard anything from u in a while.† And while im here thought i would give u a little update.† My insurance company is still refusing the ACI surgery and have sent me to yet another doctor, for those of you keeping track .. this is doctor number FOUR now.† †This new doctor doesnt feel i am a good candidate for ACI surgery. ( Let me back up a minute ... i gathered all my surgical notes and such from all doctors before going to see the new surgeon, while reading them before my appointment i find out that my OBI plugs "failed" ... i didnt know this ... no one mentioned it to me.† But the one autoplug is doing fine.† †The problem is now that i have 2 holes measuring 12x7x7 in the subchondral bone now)† The new doc said that since i have already failed one "biological" surgery that the odds were good i would fail a second.† And now with the holes in the bone... i dont have a good base for the aci surgery.† †We have decided to go for another scope so he can take a good look at my knee for himself and he feels at this time i am a good candidate for a HemiCAP procedure for the MFC and the trochlea.† †So my surgery is set up for June 14th and we will just go from there to see what my insurance says about the HemiCAP.

I hope you both are doing well.

Ladee
Title: Re: Looking forward to ACI?!
Post by: RichUK on May 23, 2007, 10:31:26 AM
Hi Ladee

Sorry to hear about your latest set back. I have had similar experiences of doctors not actually telling me bits of information that are actually very important. I am doing fine at the moment though. I have got through the first six weeks of non-weight bearing and the rehab is really kicking in now - gym and hydro therapy. These have been really good and after the sessions my knee has felt almost normal again - a very comfortable full range of movement. I am still on the crutches but I think I should have worked my way off of them in the next couple of weeks or so.

I hope your insurance company finally gets its act together and that the new surgeon is able to recommend a suitable procedure. Keep us updated on your progress.

Tony, hope you are doing well. It'll be good to hear how your rehab is going . . . .

Rich
Title: Re: Looking forward to ACI?!
Post by: tundi on June 03, 2007, 09:24:27 PM
Rich,

  Glad to hear your rehab is going well. I had my 12 week appointment with the consultant two weeks ago which went quite well. He's quite happy with my progress and wants to see me in a couple of months to see how my muscle development is progressing. My early rehab has been hampered by the pain Iíve experienced on the inside of my knee which prevented me from exercising as much as I would have liked. Itís a lot better know and I can do a lot more than before, Iím cycling again and I can do 3-4 miles focusing on my bad leg comfortably without any real ill effect, I do get a fair bit of pain around the implant site if I over do it though Ė have quite a lot of work to do to build up my good leg ( which is like a chickenís leg ) and my bad leg ( think sparrow ) - I may have to break down and finally join the gym  :(

  Sound like youíre doing much better than me with your range of motion, Iíve lost 10 degrees extension Ė which is worse than before the op although Iíve not had full extension for years Iíd say it was 5 degrees pre op. Also, my flexion is stuck at 130 degrees and Iíve not made any progress with this for 2 Ė 3 weeks even with manipulation from the physio which really is painful.

  Hopefully youíll be off the crutches soon, I managed to ditch mine between 8 and 9 weeks. Itís a great feeling of freedom when you can finally bin them Ė something for you to look forward to. Itís also great being able to go up and down normally one at a time without using the hand rails. My only real problem is that the consultant noticed the metal plate inserted after the osteotomy is catching on soft tissue when I bend my knee Ė something he said weíd need to keep an eye on and he may need to make an adjustment, Iíll just have to wait and see.

Ladee, I really do hope you manage to find a doctor soon who can recommend a suitable surgery for you and you can finally start your journey to recovery soon. A quick question for you - is a HemiCAP the same as a hemi-arthroplasty (half joint replacement)?

Good luck to you both.

Tony
Title: Re: Looking forward to ACI?!
Post by: RichUK on June 04, 2007, 09:54:40 AM
Hi Tony,

Pleased to hear you are doing ok. I have been going to the gym the last few weeks and doing a bit of cycling. The gym I go to have a bike that has a motor so I can just strap my feet in and let the bike to the work when my leg gets tired doing it myself. I am still on the crutches but just playing it safe. I reckon I could walk fine but I am going to wait until the 12 week mark before taking the plunge. I am not going back to the surgeon until the end of August so I just hope everything keeps progressing well until then.

I hope your few little setbacks sort themselves out and keep me posted on how you are getting on,

Rich
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on June 07, 2007, 06:39:38 PM
Hey Tony

You asked if a HemiCAP was the same as " a hemi-arthroplasty (half joint replacement)? "   Well its a bit different they will basically only be covering the lesions... leaving the rest of the chondyle as is.  Minimal bone loss so leaves all options open for a partial or total knee replacement later.   arthrosurface.com  is the website if u want to check it out.

Glad to hear all is going well with you so far.  I go in for a scope next Thursday.... then prepare my battle with the insurance company yet again after this doc comes up with his surgical plan.

Ladee
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on June 08, 2007, 04:35:04 AM
 Robin,

I received your email ... but it wont let me reply to you ... keeps sending it back to me.   Give me your name on this site and ill reply to you here.

Ladee
Title: Re: Looking forward to ACI?!
Post by: Peg Leg on June 10, 2007, 10:07:38 PM
Ladee,

I hope things go well for you on the 14th!  I am scheduled for ACI on June 28th.  My Doc mentioned that he was in a clinical trial for a Hemi-Cap and that he may use that on my defect under the patella.  It would be great to talk to you about this!

Take care,

Robin
Title: Re: Looking forward to ACI?!
Post by: Peg Leg on June 12, 2007, 02:32:39 PM
Ladee,

I guess I wasn't clear on my condition, sorry!! I have a  MFC defect that is 1.3x2cm  and I have a defect under the kneecap that is small (do not know measurement).  My MFC defect has gotten a lot bigger since the microfracture in Oct.  My Doctor said ACI did not have a good track record under the patella (not trochlea), but he now says that he may put some of the cells in there since he will have more than enough and I am already going thru the rehab.  He said he will have a better idea when he gets a better look.
Only 2 more days until your surgery; I'm pulling for you!!

Robin
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on June 12, 2007, 09:52:16 PM
Robin

Now i got ya.  I was confused for a bit about what you were having done.    Yes im all excited ... ill find out tomorrow what time my surgery is for thursday and go from there.   Ill keep ya posted on anything new the doc finds.  Im really hoping at this point there isnt much more than the 3 lesions we already know about.  I just need some arthritis on the tibia to get into the clinical trial ... so lets hope thats the only knew thing they find.

Ladee
Title: Re: Looking forward to ACI?!
Post by: Peg Leg on June 13, 2007, 03:21:36 AM
Ladee,

I hope that your surgery is early; there is nothing worse than waiting all day without coffee!! :P  I'll pray for arthritis on the tibia; doesn't that sound weird?!!! Anyway, all good thoughts!  Let us know.

Robin
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on June 15, 2007, 06:26:12 PM
Hey all
.
Well my surgery was schedule for 2pm  but they took me in early at 12:20 or so.   Surgery went well i guess?  LOL   Anyway .... he removed the rest of the failed OBI plugs and cleaned up the rest of the knee.  SO here is what he found.   Everything has changed since my last surgery in Nov.  The MFC lesion is a bit larger but now appears to be the best part of my knee.  The patella was 15mm .... now almost the entire patella is involved along with some bone.  The trochlea is completely gone including large amount of bone.   Now the LFC which had no lesions at all in Nov .... is totally gone along with a good portion of bone.   They gave me pics yesterday after surgery.   I have no measurements yet .... but they told me to call them next week to get a copy of my surgical report and such.   Also doc wanted a few days to think about my surgical plan.... so im going to call them wednesday and see what he thinks should be my next step.. He did say that it would probably take 2 big surgeries to fix everything and that im not eligible for a clinical trial at this time.   Also said that i have too much damage now for ACI.   So at this point i can only wait.... but atleast for once i have pain meds and for the first time in a long time i have NO pain.   They gave me Toradol along with my choice of Vicodin and Percocet.  Honestly as hard on the stomach as toradol is ... its wonderful  i havent had to take a pain pill since last nite, but my stomach is already starting to pay for it.

Ill keep ya all updated as i get more info

Ladee
Title: Re: Looking forward to ACI?!
Post by: djs60 on June 16, 2007, 07:44:02 PM
Hi Ladee,

Sorry to hear about the results of your 'scope.  Sounds like it's quite a bit worse than expected.  Anyway, I hope your OS can come up with a good plan so you can move ahead & get to feeling better.

djs60
Title: Re: Looking forward to ACI?!
Post by: LadeeStingray on July 31, 2007, 12:52:16 AM
Hey all

Just a quick update.   Well seems my doc has had a change of heart again.  We were debating between ACI and HemiCAP.  Finally today we decided that HemiCAP would be my better over all option and are putting the wheels in motion with my insurance company.  I will have be having the MFC and the trochlea done.  As for the lateral damage... he said that it was caused by a "generous biopsy" for my ACI surgery which is now off the table again.   So we will see what my insurance company thinks of this surgical plan and go from there.

Ladee